Ankylosing Spondylitis: When You’re Treatment Isn’t Working

By Patrick Doherty, MD, as told to Kara Mayer Robinson 

Ankylosing spondylitis (AS) is a condition that has a big impact on your spine. It literally means stiffening of the spine. You may have pain associated with the stiffness, often in your sacro-iliac joints, which are the joints between your spine and your pelvis bone. 

AS generally progresses slowly, and managing symptoms is the main goal of treatment. The ideal is to maintain your mobility and reasonably control your pain control over time.

Your doctor may choose different treatments based on your pain, range of motion, and side effects. Over time, your first-line treatment may stop working. If so, your doctor will look at other treatment options.

First Step: Exercise

The overall strategy I use to help my patients manage AS is to treat symptoms to help with mobility and to minimize pain.

 The first treatment is often exercise, which helps with stiffness. While you can’t relieve joint stiffness directly, keeping the surrounding muscles toned, stretched, and strong can improve your flexibility.

I encourage my patients with AS to move, do exercises, stretch, and consider yoga for flexibility and mobility.

 This may involve a physical therapy program. A physical therapist can use muscle massage, traction, strengthening, and posture awareness to help you improve your flexibility and your range of motion.

 Activities like yoga are exceptionally helpful in maintaining strength and flexibility at the same time. You can increase your activities as long as you keep strengthening and stabilizing without it leading to pain or harm. You should avoid painful activities, but no specific activities are off limits, as long as you can do them without causing pain.

 Obviously, this is a process and it’s best to ease into any fitness or stretching program. If you do it safely, keeping your muscles strong can be the key to preventing injury, improving your range of motion, and helping with pain control.

First-Line Medication

If you have advanced pain, your doctor may recommend anti-inflammatory medications like ibuprofen and naproxen, which are often the first line of treatment.

 These first-line agents are often quite effective at reducing pain and allowing better mobility. Anti-inflammatories don’t change the nature of the disease, but they do help with range of motion and activity.

 Generally speaking,  anti-inflammatories have minimal side effects. Minor side effects include abdominal pain, diarrhea, dizziness, headaches, indigestion, and drowsiness. Side effects that are more serious can include: cardiac injury, injury to the kidney, and stomach ulcers. But the risk of serious side effects is low, generally under 2%.

When Treatment Fails

Over time, it’s common for first-line treatments to fail. At that point, your doctor will look at other options.

 Signs that your treatment isn’t working include:

• Decreased pain control
• Intolerable side effects
• Worsening stiffness

 At this point, your doctor will want to know about your symptoms.

 Your doctor may ask questions such as:

• Is pain the biggest issue?
• Is range of motion more important?
• Are side effects preventing you from following through with your treatment?

 Your answers will help your doctor choose what to try next. Your doctor will also consider what they’ve seen in their own experience, like what similar patients have tried in the past and how effective the treatments were.

Next Steps

When your first-line treatment fails, your doctor may recommend treatments including:

• Disease-modifying antirheumatic drugs (DMARDs)
• Corticosteroids
• Biologic agents

DMARDs

Disease-modifying antirheumatic drugs help treat the symptoms of rheumatoid arthritis, which includes ankylosing spondylitis, and also help change the course of the disease. Examples of DMARDs are hydroxychloroquine and methotrexate.

 DMARDs slow the progression of AS by preventing inflammatory reactions. They help prevent joint damage and can help preserve the structure and the function of your joints.

 As with any medication, you may grow a tolerance to these medications, and their effectiveness in treating your pain and preserving function can diminish over time.

Corticosteroids

Corticosteroids are medications that are also considered DMARDs. They help to decrease your inflammation. They also help preserve your joint function by lowering the rate of damage to your joints.

Biologics

If your first-line treatments don’t work, your doctor may consider trying biologic medication.

 Biologic agents target specific molecules on your immune system cells. They work on your joints and on specific receptors to slow the progression of AS. There are different types of biologic agents that target different things.

Biologics used to treat AS include:

• Abatacept
• Adalimumab
• Anakinra
• Baricitinib
• Certolizumab pegol
• Etanercept
• Filgotinib
• Golimumab
• Infliximab
• Rituximab
• Sarilumab
• Tocilizumab
• Tofacitinib
• Upadacitinib 

All of these are injected, usually under the skin.

 Biologics are becoming increasingly popular because they’re more and more effective, and the side effects associated with them are improving substantially. 

 They’re often added to other treatments and have specific targets with ankylosing spondylitis.

Working With Your Doctor

Everyone is different, and it can take weeks or months to find the correct treatment. Over time, you may need to adjust or change your treatment based on its effectiveness, side effects, cost, and insurance coverage. 

The main point to remember when dealing with your ankylosing spondylitis treatment options is that there needs to be an ongoing discussion with your doctor. This helps make sure that over time your treatment remains effective, your side effects are managed, and their interactions are evaluated. 

As time passes, it’s not unusual to change treatments for a variety of reasons. It’s normal to be frustrated, but understanding this can help you manage your frustration. 

Remember that the ideal treatment is the one that’s right for you, with support from your family, friends, and health care team. For the best outcome, be engaged in your care, try to keep communication open, stay active, and have realistic goals.